Me, my dad, and dementia

We were in Portugal. It was baking hot. My cheeks ached from my goggles, which were too tight and had been on all day. I’d been diving in and out of the swimming pool, scooping up coins from the blue and white tiles. I’d found enough to buy a small wooden sail boat I’d seen in a gift shop in town.

And my dad was proud of me.

We went together to buy the boat, I remember the coolness of the evening, the cobbled streets, the whitewashed walls along narrow alleys and the scrawny cats that looked like they’d not eaten for months.

But what if someone took that memory away from me? Would I notice? Would I know something precious was missing?

Four years ago, my dad was diagnosed with dementia with lewy bodies. You’ve probably never heard of it and to be honest when my mum told me I struggled to get past the word dementia.

And he was only in his 60s.

Perhaps we should have seen it coming. He’d struggled with driving on the ‘wrong’ side of the road when we’d travelled to the United States to see my brother, and he’d got frustrated and annoyed at Christmas when the dust was blown off the board games.

But we didn’t. Whether it was because these things ‘don’t happen to us’ or because it was so gradual, I don’t know. Maybe both. But in the end it had been years in the making, until one weekend, suddenly, he hallucinated. He just didn’t trust my mum, he thought it was the morning, when it was 10 o’clock at night.

It was terrifying. For him, for my mum, for me.

Quick medical lesson. Lewy bodies, named after Dr Frederich Lewy, are tiny deposits of an abnormal protein in nerve cells in the brain. No one knows why they appear, but they can build up in the areas of the brain which are responsible for muscle movement and memory. Apparently scientists think they disrupt chemical signals between brain cells, but no one is sure.

And my dad is one of the 850,000 people in the UK living with dementia. As we all live longer, this figure is expected to rise to more than 2 million by 2051.

There are more types than you’d think. Dementia with lewy bodies accounts for up to 10% of all dementia. The actual number is vague because it is likely to be missed or diagnosed as something else. It affects everyone differently but it is basically a mixture of both Alzheimer’s and Parkinson’s disease, with a few surprises that are unique to dementia with lewy bodies.

So, for my dad, puzzles have become complex. For a man that was once a chief financial officer, my dad now struggles to use analogue clocks. For a man that taught me to drive with surprising patience, my dad can no longer get behind a wheel. A roundabout has become tougher than a fiendish Sudoku.

We’re in the early stages. His movement has slowed some, his mood, understandably, can get low sometimes. It’s knocked his confidence. I think he worries more about social situations or going anywhere where he may need to walk too far.

But he keeps going, keeps trying. He is still my hero.

And his long-term memory is amazing. We still joke about silly family stories, like when the time a fridge door fell off in our holiday apartment and, always prepared, he had a screwdriver set in his luggage ready to save the day.

For us, the NHS has been its usual blend of the indispensable and the indescribable. It felt like it took a very long time to get dad diagnosed, for many year’s depression and denial masked the symptoms. But when we’d finally got past the bureaucracy, endlessly chasing referral letters and faxes and waiting…when we got the news we didn’t want to hear, I can’t fault the care he’s received.

We’ve been especially lucky to have an amazing group here called Wokingham’sYounger People with Dementia, who have been an invaluable source of support and friendship for both my mum and my dad as they face a life as carer and patient, as much as loving wife and husband.

I have to say my mum has been amazing throughout, brave, resilient and unbelievably adaptable. She cares for dad in every sense of the way. Of course she’ll do anything for the man she loves, but it’s the daily list of little things she does, with a smile, that I admire most.

While I know it can’t be enough, I’ll do what I can. Be there. Whether that is a shoulder to cry on, someone to shout at about how unfair it all is, or someone to put stuff up in the loft.

But more recently I’ve started to think how to talk to my own son, who is not yet four, about granddad. My boy, and his 9-month-old sister, will surely have their own questions one day. What would you say?

I hope I’ll be brave enough to be honest. I hope I’ll tell him that granddad just gets confused sometimes and that while he’d love to play football he can get tired quickly or lose his balance. That he was great at those things, but that a part of the brain that helped him do all of that isn’t working quite as well as it once did.

But I’ll also tell him how much he loves his grandchildren, how they light up his day.

So we’ll carry on, enjoying every moment as best we can, and taking pleasure in those little things, enjoying reliving old memories and making new ones.

Dementia can be a dirty word, but we’ve got to talk about it more. It’s great to hear government lay down the challenge of finding a cure for dementia by 2025. We need to take it seriously, and funding for research into dementia stood at just £74m in 2012/13. I say just because in the same year we donated more than £132m to the RSPCA and spent more than more than £500m on cancer research.

If you’ve read this far, whether because it affects someone you love, or you’re afraid of what the future holds for you, my one piece of advice is that you try not to fear it. Remember that an inheritance includes passing on and treasuring great memories with those you love, not just things and money. It’s a cliché, but don’t put off until tomorrow what you can do today.

I’ve kept that little wooden sail boat, and all the memories I’ve made with my dad, safe. I’ll keep adding to them and, one day, I’ll be sure to pass those memories to my children too.

10 things about dementia you probably didn’t know

£26 billion spent on dementia, with around half of the bill picked up by people with dementia and their families

£73.8 million spent on dementia research in 2012/3. Compared to £502.8 million on cancer research

47.5 million people living with dementia in the world

850,000 people living with dementia in the UK

225,000 people develop dementia each year

40,000 people under 65 have dementia

44% of people with dementia in England, Wales and Northern Ireland receive a diagnosis